Exploring Disability

Colin Barnes, Geof Mercer

• Publisher: Polity
• Year: 2018
• ISBN:
  9780745698915
• Edition: 2
• Topic: Ciencias sociales
• Subtopic: Discapacidades en sociología

The second edition of this widely used text has been carefully rewritten to ensure that it is up-to-date with cutting-edge debates, evidence, and policy changes. Since the book's initial publication, there has been an expansion of interest in disability in the social sciences, and disability has come to play an increasingly prominent role in political debates. The new edition takes account of all these developments, and also gives greater emphasis to global issues in order to reflect the increasing and intensifying interdependence of nation states in the twenty-first century.

The authors examine, amongst other issues, the changing nature of the concept of disability, key debates in the sociology of health and illness, the politicisation of disability, social policy, and the cultural and media representation of disability. As well as providing an excellent overview of the literature in the area, the book develops an understanding of disability that has implications for both sociology and society.

The second edition of Exploring Disability will be indispensable for students across the social sciences, and in health and social care, who really want to understand the issues facing disabled people and disabling societies.

CHAPTER 1
Introduction: Analysing Disability

IN Western industrialized societies, ‘disability’ is widely regarded as an individual failing and a personal tragedy. This is confirmed by its pre-eminent medical diagnosis in terms of individual pathology, and associated deficits, abnormalities and functional limitations. Crucially, these difficulties become both the explanations for the wide-ranging social disadvantages and dependence and the justification for routine intervention in disabled people’s lives by health and social welfare professionals. This approach is further confirmed in public attitudes towards the ‘victims’ that emphasize ‘imaginative concern, mawkish sentimentality, indifference, rejection and hostility’ (Thomas, 1982, p. 4).

In the 1960s, disabled activists in North America, Scandinavia and Western Europe initiated campaigns against this disability orthodoxy. The goal was to shift public and policy attention away from its overwhelming preoccupation with individual ‘incapacity’ as the source of their dependency and marginalization. Instead, the spotlight was directed onto the role of ‘disabling barriers’ (social, economic, cultural and political) in excluding disabled people from participation in mainstream society and denying their citizenship rights (Finkelstein, 1980; DeJong, 1981).

The academic community was relatively slow to attribute any significance to disabled people’s political actions, let alone to recognize the potential of social analyses of disability. ‘There were no disjunctures between the dominant cultural narrative of disability and the academic narrative. They supported and defended each other’ (Linton, 1998a, p. 1). It was not until the 1990s that a trend towards rethinking disability gathered momentum. This is evident in the sustained growth in monographs, edited collections and specialist journals, which warranted claims of a distinct field of ‘disability studies’, with specialist university programmes appearing around the world. Moreover, contributions have expanded across the social sciences, education, law and the humanities (for example, Butler and Parr, 1999; Gleeson, 1999; Albrecht et al., 2001; Longmore and Omansky, 2001; Stiker, 1999; Breslin and Yee, 2002; Snyder et al., 2002; Borsay, 2005; Tremain, 2005a; Goodley and Lawthom, 2006; Pothier and Devlin, 2006; Florian, 2007).

The aim of this book is to explore key issues and themes in developing a sociology of disability, while drawing on insights from other (social science) disciplines. In this introductory chapter we prepare the ground by, first, tracing the grass-roots origins of critical responses to the dominant ‘personal tragedy’ approach and the instigation of a new ‘disability politics’ to challenge conventional theory and practice. Second, we outline key parameters for sociological analyses of disability, and the diversity in theoretical perspectives and the contrasting implications for studying disability. We conclude with an overview and rationale of the central issues examined in subsequent chapters.

Grass-roots mobilization

A significant stimulus to recent academic and policy debates on disability has been the politicization of disabled people. Groups of disabled people have set up their own organizations with an overtly political agenda to campaign against discrimination and for greater inclusion in mainstream society. While there had been important instances of protest by groups of disabled people earlier in the twentieth century, it was the rise of the American Independent Living Movement (ILM) in the 1970s that first attracted international awareness of the politicization of disability and the possibilities for collective action (Bowe, 1978; Longmore and Omansky, 2001). In Europe, disabled people prompted a variety of innovative projects, such as accessible housing in Sweden (Brattgard, 1974; Grunewald, 1974) and the Het Dorp community in the Netherlands (Zola, 1982).

The exponents of this new disability politics embarked on ‘a struggle for both self-determination and self-definition’ (Longmore and Omansky, 2001, p. 8). Historically, disabled people have been ‘isolated, incarcerated, observed, written about, operated on, instructed, implanted, regulated, treated, institutionalized, and controlled to a degree probably unequal to that experienced by any other minority group’ (Davis, 1997, p. 1). Disabled people now highlighted their everyday familiarity with social and environmental barriers, restricted life chances, and negative cultural representations. This required a re-evaluation of their individual and collective support needs and rights. It encompassed a critique of the regulation of disabled people’s everyday lives by a diverse group of health and welfare professionals. Disability activists did not deny the positive potential of appropriate medical and allied intervention. Rather, they challenged those professional experts who equated disability solely with functional limitations and concentrated service provision on individual rehabilitation and adjustment.

Needless to say, disabled people’s campaigns demonstrated the influence of contrasting national and historical contexts, such as the role of the welfare state in disability policy. In the USA, for example, the primary spur to political activity was the characterization of disabled people as a minority group who were denied basic civil rights and equal opportunities. This emulated protest movements by black people and women (Zola, 1983; Hahn, 1985; Linton 1998a). In the UK, activists favoured an interpretation of disability as a form of social oppression or exclusion encountered by people with impairments. This underscored arguments for radical social change rather than piecemeal reforms as the means for overturning the disabling (capitalist) society (Finkelstein, 1980; Oliver, 1983).

Notwithstanding these differences, the new disability politics identified a distinctive set of policy objectives for improving disabled people’s life chances. These ranged from civil/citizenship rights, independent living in the community and equal access in the built environment, to mainstreaming education, employment and leisure opportunities. Such campaigns generated increasing interest around the world. In 1981, Disabled Peoples’ International (DPI), an international umbrella for organizations controlled and run by disabled people, was formed. A decade later, 4,000 delegates from over 120 countries attended its third world congress in 1992 (DPI, 1992).

A range of important initiatives emerged at the international level (Albrecht et al., 2001; Barton, 2001; Barnes and Mercer, 2005a, 2005b). The United Nations (UN) introduced measures on the rights of disabled people, notably the General Assembly’s Declaration on the Rights of Disabled People in 1975. It nominated 1981 the International Year of Disabled Persons and proclaimed 1983–92 as the Decade of Disabled Persons. Disabled people’s protests also helped persuade the World Health Organization (WHO) to replace the International Classification of Impairments, Disabilities and Handicaps (ICIDH) (WHO, 1980) with the International Classification of Functioning, Disability and Health (shortened to ICF), which sought to incorporate medical and social approaches (WHO, 2001a). Governments in North America, Europe and Australasia responded with policies to improve disabled people’s everyday lives, recognize the rights of disabled people, and introduce anti-discrimination legislation (Clear, 2000; Bickenbach, 2001a; CEC, 2003; Doyle, 2008).

However, an individual, medicalized perspective exercises an enduring influence around the world on public and policy debates about disabled people’s support needs, as in ‘special education’ and segregated/sheltered employment options (Longmore and Omansky, 2001; Ratzka, 2003; Morris, 2004). The slow progress of disabled people’s campaigns sparked renewed discussion about the aims and strategies of disability politics around equality and inclusion, identity and representation, citizenship and human rights.

Sociological perspectives

How then might sociological analyses contribute to understanding disability and its changing political and policy profile? In his celebrated essay on the sociological imagination, C. Wright Mills (1970) argued that the discipline has a particular contribution to make to social and political analyses by encouraging critical reflection on seemingly ‘personal troubles’. These affect individuals and their social relations with others but are more appropriately understood as ‘public issues’ linked to social institutions and society more generally (ibid., p. 14). Hence, the sociological interest in reviewing the connections between individual experiences and biography and wider historical and political circumstances:

Deeply immersed in our daily routines, though, we hardly ever pause to think about the meaning of what we have gone through; even less often have we the opportunity to compare our private experience with the fate of others, to see the social in the individual, the general in the particular; this is precisely what sociologists can do for us. We would expect them to show how our individual biographies intertwine with the history we share with fellow human beings. (Bauman, 1990, p. 10, emphasis in original)

As an illustration, the failure of a disabled individual to obtain paid employment is widely explained in terms of individual shortcomings. However, if the unemployment rate for disabled people is much higher than that of the rest of the population, an alternative account might be more persuasive. One suggestion would be that the disabled population generally experiences exclusion from the workplace because of structural factors or discrimination. This moves the explanation from the individual level to collective social disadvantage, and a different set of policy responses.

This illustrates a fundamental sociological theme of the value of reassessing familiar or common-sense ways of thinking and behaving. ‘The fascination of sociology lies in the fact that its perspective makes us see in a new light the very world in which we have lived all our lives’ (Berger, 1963, p. 21). Apparently ‘natural’ attitudes, institutions, processes and structures are regarded as contingent on social factors and contexts, while sustained and modified by human action. The aim is not to replace ‘error’ with incontestable ‘truth’, but rather to engage in critical reflection to improve our understanding of the social world (Bauman, 1990).

Additionally, comparative studies of disability illustrate the diverse understandings of disability that exist outside British (and Western) society. It is equally necessary to recover the ‘world we have lost’ to examine how and why attitudes and practices towards disability vary historically. Moreover, ‘Sociology cannot be a neutral intellectual endeavour, indifferent to the practical consequences of its analysis for those whose conduct forms its object of study’ (Giddens, 1982a, p. vii). Instead, social inquiry should draw on the comparative and historical standpoints to produce a ‘critique of existing forms of society’ and prompt an awareness of ‘alternative futures’ (Giddens, 1982b, p. 26).

From this basic statement of intent, a number of themes dominate theoretical debates in sociology:

Firstly, sociology is concerned to understand the meaning of social action, that is the subjective perspective, emotions and feelings of human agents as social individuals. Secondly, sociology is concerned with the relationship between agency and structure. Sociology attempts to explore the relationship between human action and the structural determination of social relations by certain constraining elements which in general we can describe as power relations. Third, classical sociology has been organised around the problem of social order, that is the question of social integration through the presence of consensus and constraint in human life. Quite simply, sociology is concerned with the ultimate question of ‘How is society possible?’ Finally, sociology is about the analysis of the social processes and circumstances which constantly disrupt and disorganise the fragile order of social relations and social exchange. We can summarise this problem as the question of social inequality, because it is through an analysis of the unequal distribution of power (in terms of class, status and power) that we can begin to understand the de-stabilisation of social relations and social systems through organised conflict and individual resistance. (Turner, 1995, p. 3)

To understand the social world, it is necessary to explore people’s subjective ‘definition of the situation’ and their attempts to navigate its inherent uncertainties and dilemmas. A central assumption underpinning social action is that human beings are creative in that they have a capacity for choice or ‘agency’, but are still constrained to some degree in what they think and do. This has led to considerable variation in assessments of the relative importance of agency and structure. Some accounts emphasize structural factors and stress how behaviour and attitudes have their bases in the social circumstances and the social groups to which people belong. Other approaches represent social interaction as far less ‘determined’.

Another major area of debate in classical sociology is the basis of social order and the sources and containment of potential disruption. Social order is often fragile, with diverse and competing interests, so that accounts have polarized in how far they represent social life and its underlying structures and processes as characterized more by consensus or conflict. A consensus approach assumes that social stability is maintained because of the effectiveness of socialization, so that people generally accept the benefits of co-operation and the legitimacy of political regulation. In contrast, from a conflict perspective, society is distinguished by power inequalities, with diverse and frequently antagonistic material and other concerns.

This raises further questions about the main forms of social control, power and regulation. Typically, dominant social groups seek ways to perpetuate and enhance their privileged position and to secure the compliance of subordinate groups, whether by overt use of power and authority or through more covert influence and manipulation, perhaps by generating a set of ideas (ideology) that reflect and sustain the position of a social group. Over recent decades, increased significance has been accorded to ‘ideological domination’, hegemony and the generation of ‘willing consent’, which potentially deflects attention away from structural (class) inequalities (Gramsci, 1971, 1985). At the same time, it is important to investigate how dominant groups are destabilized and new ideologies become the basis for collective resistance and mobilization.

This literature links with another major sociological topic: the extent and character of social inequalities and exclusion. A vital question is how socially defined groups (based typically in industrialized societies on social class) are located differently in respect of power and status. It is illustrated by empirical studies in...